1

(16 replies, posted in Introductions!)

Hi There -
I am in Atlanta too and my husband has CC.  We are currently being treated at MD Anderson.  My husband is in a trial.  The trial is in pill form so we only have to travel there once per month.  He was diagnosed in April.  I would really recommend that you go see Dr Mark Johnson or Dr Sellers at Piedmont.  They work together.  We have seen Johnson twice and we love him.  They are aggressive.  They will not do surgery on my husband right now because he has tons of affected lymph nodes.  BUT, it does not sound like that is the case with your husband.  My husband, Travis, is 38 and we have 3 little kids.  I am so sorry that you are going through this.  It is awful.  Contact me anytime.  We are in Marietta.  I will be happy to share what we have learned.

2

(40 replies, posted in Clinical Trials)

Regina -
My husband is in the trial.  He started on 10/23.  He was diagnosed in April and was on Gem/Cis for about 5 months and it quit working.  It quit working right in time to get on this trial.  We go back to MDA on 11/20 for the first blood work apt. We are working with Shroff and Zinner as well. 
My husband, Travis is having worse side effect than he did with Gem/Cis.  His rash is really bad and his belly bothers him.  Gas and diarrhea.  Tonight he even has chills.  His blood pressure has gone up too. 
I wonder if we will be at MDA at the same time?   
My husband is 38 and we have 3 little ones.  Ages 6,4 and 2. 
Praying that this trial does some good!!!
Carrie Roberts
From Atlanta

Hi All -
We are the ones who went to MD Anderson and paid $24,000.  Our ins did not cover it at all and they would not see us unless we paid that upfront.  We had to charge most of it and we are slowly paying it back.  My husband was not 100% diagnosed at the time.  He had not been treated at all either so we were going for a confirmation on diagnosis as well as a suggestion for treatment.  It may be different if you are already being treated and they don't have to do a CT scan or pathology, but that is what we were going for.  The $24,000 covered Pathology, CT Scan, Blood Work, and two LONG dr visits with Dr Shroff who specializes in CC and Pancreatic.
I agree that it is outrageous, but I promise that it is true:)!

I found a thread from 2006 and 2008 on here and it doesn't look like anyone recommends Burzynski.  Is the opinion still the same?

Help??? You know how it is. So many people recommend so many different things, but we keep hearing Burzynski Clinic. Has anyone been? Do they even treat Cholangio? Any advice would be greatly appreciated!

36 yr mom of 3. Hubs was diagnosed in April. We currently go to a local oncologist and to MD Anderson. Gem/Cis worked like a charm for 5 months and now the cancer is on the move again. We head to Houston on Fri to see about getting Trav into a brand new trial at MD Anderson. We are wondering if we should try to visit Burzynski? So hard!!!

Jason - Have you been to Mayo?  What did they say?

7

(9 replies, posted in In Remembrance)

Anna -
So sorry that you lost your mom.  What a difficult time.  I pray that you are able to navigate through the next few months with peace and strength from God.  My thought are with you tonight.
Carrie

8

(167 replies, posted in General Discussion)

Pam -
I think of you and Lauren constantly!  I am praying for your daughters perfect recovery. 
Carrie

9

(15 replies, posted in Introductions!)

Terri -
I don't know how to help at all.  I just want you to know that I will pray for you.  My husband was recently diagnosed and it is so hard.  I know that your world has been turned up side down.  This is a great place to vent.  I am very new to this as my 38 yr old husband was just diagnosed about a month ago, but I know what it is like to be a care taker and then have to deal with kids.  It is an exhausting task and my husband is not having the emotional issues that your poor mom is having.  That breaks my heart for her and for you.  The others on this site have much better advice than I do, but I wanted you to know that I care. 
Carrie from Atlanta

My husband (38 symptom free with cc in liver and lymph nodes) starts Gem/Cis tomorrow.  So excited to actually be doing SOMETHING!  Praying so hard that his cancer will respond positively.  It has been so tough because we have left our three babies (2,3 and 5) so much in the last 3 wks because of dr visits here in Atlanta and at MD Anderson.  My 3 yr old Piper is having a hard time. Crazy how our life change over night.  I know you all relate.  Love the CC family already.  So great to have support.

Carrie

11

(38 replies, posted in General Discussion)

Willow - Thank you so much for answering.  Whether it is common or not it makes me feel better to know it has happened.  Now I can go to sleep tonight and be thinking maybe it will happen for my husband:).  We start chemo tomorrow.  First treatment.  We are praying hard.  Carrie

12

(38 replies, posted in General Discussion)

Pamela - I am so excited for you and your daughter.  What fabulous news.  Do you mind if I ask a few questions?  Did your daughter have any cancer in her lymph nodes?   I don't think so because I have looked back at your previous posts, but I am just curious.  My husband does and I just don't know if the chemo ever kills this cancer.  Meaning will chemo alone get it out of his lymph nodes?  I know that no one has the answer, but I guess I mean does it EVER happen?  I know that you are tired and I don't want to bother you too much.  I am going to also post a general question about this, but you seem so helpful so I thought I would go straight to you:).  I hope that Lauren's recovery goes just perfectly.  My prayers are with you and your daughter.  Carrie

I am so excited for you.  My husband (38 yrs old and just diagnosed) starts Gem/Cis on Thursday.  I pray that we get the same results.  His is in liver and lymph nodes.

14

(2 replies, posted in General Discussion)

Do most people do Y90 while on Gem/Cis or separately?  My husband is 38 and completely healthy outside of the CC:).  I guess I should say symptom free.  He has liver tumors and it has spread to the lymph nodes.   The docs who we LOVE are willing to do all at the same time.  I am curious if anyone else has done that and how rough was it?

Thank you all for the kind welcome.

They are sending his biopsy to Foundation One this week.  Thank you!  We will take any advice:).

17

(3 replies, posted in General Discussion)

My husband, Travis (age 38 with three kids) was recently diagnosed with CC.  They told us that his CA19-9 numbers were at 91,000.  We asked if it was a typo.  They said no.  Has ANYONE ever heard of such a thing.  We went to MD Anderson and we forgot to ask the dr there about it.  Not sure it matters.  I just think that it is so bizarre. 
Thanks,
Carrie

Rain - Thank you so much for your info and thank you for taking the time to read our posts and blog.  Thank you most of all for your prayers from Australia!!!

Also, Bompie - Travis is not candidate for surgery now, but I will let you know what the surgeons here say.  Meaning what there requirements will be to get him to a resection.  We know it is a shot in the dark and that no one would operate on him now, but we can pray:).  I'll keep you posted.

Thank everyone for the welcome. 
Jason - It sounds like we are a week behind you.  We just missed you in Houston:).  I will be very interested to find out what they say at Mayo.  Did it take long to get an apt?  I just filled out the apt form on line yesterday.  If you don't mind sharing what they say it would be so helpful. 
As I said before we see a surgeon and internal radiation team this week.  I know that Travis is not a candidate right now, but we are praying as you are too I am sure that the cancer reacts positively to the chemo.  Maybe some day he will be candidate for resection.  I have read quite a few posts so I don't remember if you have symptoms or what brought you in to find the cancer.  Travis was kidney stone pain which he has had many times in his life.  I only wish that he had a kidney stone 6 months or 1 yr ago so we could have caught this before it spread.  Can't look back, but it's hard not to think that way.  Anyway, I hope that maybe you get some helpful info at Mayo.  Let us know what they say. 
Thanks,
Carrie

Also, the Interventional Radiation has not been ruled out at all, but because the cancer is in the lymph nodes they want to run the chemo cycle right away.  In the mean time we will be discussing different direct therapy and preparing for round 2.  Hopefully he will respond well to the chemo so we are able to try the other treatments.

Thank you so much for your reply.  We saw Dr Shroff at MDA.  She agreed with our local oncologist who we love about the chemo treatments.  Or local guy is a 42 yr old oncologist out of UNC who is full of piss and vinegar, just what we wanted.  Our dr and Dr Shroff both recommended Gem/Cis.  MDA recommended that we do the chemo here in ATL and she was willing to work with our Oncologist.  She recommended the treatment to be every 14 days instead of the 2 weeks on/1 week off.  Travis has 8 tumors in his liver.  1 main (7.6cm) and 7 small satellites.  Then he has cancer in his lymph nodes in his abdominal wall, chest, and pelvis.
 
Glad to know about the Rochester Mayo.  Do you think that we will get any new info there?  We will most likely have to pay out of pocket for that opinion.  We will gladly do so, but as I read the blog it looks like the treatments esp at first don't vary much so I hate to pay to have someone else tell us to do Gem/Cis.  We are meeting with a surgeon on Tuesday at Piedmont hospital as well as an interventional radiologist.  We know that Travis is not a candidate for surgery right now, but we have this doctor who believes in Travis and he wants the surgeons to know us.  We have heard fabulous things about the surgeons at Piedmont and the internal rad guys.  Over the phone they told Travis that they are going to look at him as a 38 yr old father of 3 and not a statistic.  We are happy with our care here in ATL, but we just keep wondering if there is something out there that we might be missing.  I look at the clinical trials.org, but I have to admit I have a hard time knowing what it what.  This is all so new to us. 

Travis is totally symptom free.  He went in to the ER for kidney stone pain and they found the liver tumor and the large lymph nodes.  The kidney stone pain is gone and he has no other pain except that he says he can occasionally feel the tumor.  No pain but rather awareness. 

Have you ever seen chemo get the cancer out of the nodes?  Also they told us that his CA19-9 levels were at 91,000???? Have you ever heard of that?  We asked if it was a typo and they said no.  So crazy! 


Thank you to anyone for their advice!  I am pouring over everyones entries and trying to learn from other peoples experiences.  It is nice to see others out there like us. 

Travis's story is at www.concretefaith.org.

Hi All - I am Carrie and my husband was diagnosed with cholangiocarcinoma in the last few weeks.  He actually found out that he had cancer the day after his 38th bday, April 22nd and then days later we found out it was CC.  He was diagnosed in Atlanta but then we went to MD Anderson last week and received confirmation on the diagnosis.  We are back in ATL and he starts chemo on Thursday.  We have 3 kids who are 5, 3 and 2.  I just wanted to introduce myself.  We are looking into going to Mayo in JAX.  I don't know if that would be a waste after already going to MD Anderson.  I am sure that my husband Travis will be introducing himself soon as well.  We are finding our peace and hope in God.  We are happy to have found this group.  Carrie